A blog about raising kids on the spectrum, working with kids on the spectrum, friends on the spectrum. And lots more.

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Saturday, April 16, 2011

Perspective is a Choice.

How do parents of children with Autism determine what perspective they will take in relation to it? This is the question I find myself pondering in recent times. I wonder if the process of grief and acceptance changes for those who knew their child was different from a young age, versus those who say their child developed normally and then suddenly, as if overnight, slipped away, 'stolen' by Autism? Is it an individual response based on a naturally optimistic or pessimistic personality? Is it based purely on the childs presentation? The higher the functioning the more positive the parent? Do those who believe vaccines caused their childs Autism take a dimmer view of the diagnosis than those who do not? I find these interesting points to consider, yet have no answers.

Harri was born Autistic, there was no regression. And although I was distressed when his diagnosis of pdd-nos was confirmed, after reading further about Autism and learning that many on the spectrum were living happy and meaningful lives I was buoyed. It has never occured to me that my son will not be one of those people in the future. I know we have a hard road ahead, and that he will struggle in areas most do not, but I can't see the tragedy here. I can't fathom choosing a narrative that considers my son as defective, diseased and needing to be 'fixed'. Perhaps that's because he is at the milder end of the spectrum so far?

I see more of his ASD emerge as time goes on. His flapping has become so frequent now I am going to have to put lead in his shoes to stop him flying away. His anxiety is also escalating, and he now cries at things that once simply bemused him. His need to control his environment and for repetiveness are becoming very entrenched, and his distress when this does not occur is also increasing. His abilty to focus is receding rather than increasing during therapy. His running off has also ramped up now he escapes the pram. His sleep remains an issue too. His destructive streak also continues unabated. So yes there's plenty of issues we are dealing with and learning to manage as time goes on. And all this reminds me that we are still yet to see the full presentation of Harri's Autism. Yet still I cannot anticipate anything other than a good outcome. Am I in denial? Maybe, but even if that is the case, the expectations I have of him mean that I do not lower the bar. He will be pushed to strive and accomplish. Something I might not do if I chose a different perspective. Why should I not expect him to prevail when so many others have despite their challenges? I understand that he and I are not viewing the world in the same way but I do assume intelligence and capacity for enormous progress. Why shouldn't I when so many before him have gone on to achieve so much? Even those who were once considered 'low functioning' or intellectually impaired.

10 comments:

Sharon, I think it's absolutely crucial to continue doing what you are doing: setting the bar high and expecting your son to do well in life.

While there have been times that I've wished I'd been diagnosed earlier, I consider myself lucky that I was not. My parents did not see my reading for hours at the age of 3, or having a prodigious vocabulary, or being shy and sensitive, to be anything other than very positive things. They expected great things out of me, and while I've had my disappointments, I think that handling disappointment is much easier than attempting to come back from a mindset of "I'm broken and won't expect much of myself." After each of the disappointments I've had in my life (some related to autism, some not), I've picked myself up and kept going and found my way. And that's because people always *expected* me to.

I don't know where I'd be if my parents had treated me as though I were diseased. I really can't imagine. I was raised to consider myself an intelligent, capable person, and that's what I am.

I think how people react to things is so... biological. The way we handle things is based on a lot of things out of our control. I was devistated at one point, and I feel lucky that the only thing that made me feel better back then was taking action and reading everything I got my hands on. How long would I have been stuck in a cycle of unnecessary grief and uselessness if my coping mechanisms were less helpful, or if the situation was more dire? But you are right, for sure, and the best epiphany I've had was that NO parents are able to predict the path our children will take, or how successful they are. ALL of us can only just be good parents and love our children and raise them as well as we can so that they can find happiness and independence. I truly feel for those of us who are "stuck" in a negative perspective because I think for a while I was there, and I'm just glad I climbed out of it. I hope others will join me on the other side, it's better over here, I promise!

Hi Sharon -I live in Perth and I am the grandmother of a five year old boy with mild autism.I follow your blog diligently.Please have a look at of an autistic boy's high school graduation speech. What impressed me a lot was the continuous support he received from his peers throughout his high school years.

Hi Sharon - his name is Eric Duquette (not sure of the spelling of surname). Anyway if you go to youtube and enter 'graduation autistic high school' you will undoubtedly find the video. Good Luck and have the Kleenex ready.

I'm with you on this one....I challenge my son (and my girls) every day to be the best he can be, regardless of diagnosis. If I don't set the standard for him then no one else will. I feel like I have to set the example and the others will follow. It's also up to me gently drop back and give hugs when needed too. Secretly, the best part. ;)

CloseEdit profileSorry I'm so late getting to this. I agree that it's better to reach higher and keep trying to move forward. Keep believing in what's possible. There are enough forces that will try to slow us down or even push us backward - that will try to steal our hope. We need to be the force keeping things heading in a positive direction. I think it's also important to be very careful about putting any particular timetable on that progress.

April 23, 2011 11:48 AM

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Sorry I'm so late getting to this. I agree that it's better to reach higher and keep trying to move forward. Keep believing in what's possible. There are enough forces that will try to slow us down or even push us backward - that will try to steal our hope. We need to be the force keeping things heading in a positive direction. I think it's also important to be very careful about putting any particular timetable on that progress.Comment as: Edit Settings – Sign outSubscribe by email